Letter: Raising awareness about bleeding disorders

Published: 3/28/2018 12:01:09 AM

On March 21, Gov. Chris Sununu joined with members of the New England Hemophilia Association recognizing March as National Bleeding Disorder Awareness Month. The other five New England states also recognize NBDAM.

My grandson has a rare bleeding disorder called hemophilia. Outwardly he looks like any other active 9-year-old boy and so long as he doesn’t cut himself and bleed for extended periods or get injured and have bruises lasting for weeks, you wouldn’t think he was any different from you and me.

However, his body is fighting a battle that is impossible for him to overcome without the help of an extremely expensive synthetic drug called clotting factor.

Each of us experiences thousands of internal bleeds every day as we go about our everyday lives, especially in our joints. These bleeds are repaired without us being aware of it because our blood contains all 17 clotting factors. When just one of these is absent, the clotting process stops.

Hemophiliacs, including my grandson, suffer with this 24/7/365 for their entire lives: blood that will not clot.

Historically, the bleeding disorder community relied on donated blood for their factor, but this supply proved unreliable. Medical science has developed synthetic factor offering hope to hemophiliacs and their families.

We are thankful to Gov. Sununu for his efforts to increase public awareness of this debilitating condition and supporting efforts providing help to more than 10,000 people living in New Hampshire with a bleeding disorder.



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